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Charity & advocacy
Charity & advocacy
Join the movement: championing care for rare musculoskeletal conditions
By CONTRIBUTOR
9 October 2024
Charity & advocacy
Haemochromatosis UK helps thousands with life-threatening genetic condition to be diagnosed through postal health kits
By CONTRIBUTOR
18 September 2024
Charity & advocacy
Alex TLC Monthly Research Summaries
By CONTRIBUTOR
12 September 2024
Charity & advocacy
Hope on the horizon: celebrating two years of Hereditary Brain Aneurysm Support and a bright future ahead
By CONTRIBUTOR
10 September 2024
Charity & advocacy
SMA Europe unites international voices in the new documentary ‘One Community. Shared Dreams’
By CONTRIBUTOR
31 August 2024
Charity & advocacy
Bridging gaps in care: How independent charitable patient assistance organisations support underserved populations
By CONTRIBUTOR
10 July 2024
Charity & advocacy
A day in the life: Being diagnosed with Fanconi anaemia as a child and as an adult—what are the differences?
By CONTRIBUTOR
18 June 2024
Charity & advocacy
Supercharging advocacy in Latin America for Hirschsprung’s disease and anorectal malformation
By CONTRIBUTOR
31 May 2024
Charity & advocacy
Huntington’s disease (HD) was not part of my plans, but it sure has a plan for me
By CONTRIBUTOR
29 May 2024
Charity & advocacy
One in a million
By CONTRIBUTOR
28 February 2024
Charity & advocacy
300 million colours of Rare: three patients and caregivers share their rare disease stories
By CONTRIBUTOR
28 February 2024
Charity & advocacy
Glasgow Children’s Hospital Charity: flying the flag for rare disease families year round
By CONTRIBUTOR
27 February 2024
Charity & advocacy
Rare Disease Awareness Day Calendar
By CONTRIBUTOR
14 February 2024
Charity & advocacy
Davis Out of the Unknown: a family’s life with Koolen-de Vries Syndrome and their search for treatment
By CONTRIBUTOR
3 January 2024
Charity & advocacy
Thoughts into Action: What is quality of life as defined by people living with inherited metabolic disorders?
By CONTRIBUTOR
22 November 2023
Charity & advocacy
Shining a light on Smith-Magenis syndrome
By CONTRIBUTOR
15 November 2023
Charity & advocacy
Do you work for a compassionate employer?
By CONTRIBUTOR
18 October 2023
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